It’s been a good week!!! We left for Cincinnati on Sunday afternoon, and with the exception of
one interstate construction hold up and the fact that the KFC we stopped at was closed...at 9:30, it was a good trip. We went to the hospital for Aida’s PET scan
on Monday afternoon, and she was awesome.
You’d never know she’d not eaten all day! She did finally
fall asleep on Mark shortly before the procedure, which was wonderful. She’s generally a great sleeper – in her
crib…with her sound machine – not so much when we’re out and about. She’s still sweet…just perpetually
awake. Anyway, though we were there for
about 3.5 hours, the scan itself was only about 45 minutes.
Once she could hold her head up again, we made a quick stop
at the house (our friends’ that always host us when we’re in town - so thankful for them!) before we
all went to Aida’s first ever baseball game…Reds vs Cubs.
We lasted through the 11th inning
before calling it a night. (It
ultimately went 13; Reds over Cubs 5-4)
Anyway, we had a great time. I’m
only a tiny bit sad that her first game wasn’t a Braves game. At least it was the National League. J
 |
| Don't let this fool you... she was just resting her eyes while she ate. She was up 'til 11p. ;) |
After a bit of a late night, we headed in to see our favorite doctors Tuesday
morning to get the results of the scan.
They were, of course, thrilled to see her. It never hurts to have the happiest,
friendliest, and probably cutest baby in the world. We were pretty excited to see them too! Almost immediately they told us that
everything looked very stable (pretty much the same), and they didn’t see a
need for the bone biopsy that had already been tentatively scheduled for Wednesday
afternoon. I’m pretty sure I threw my
hands in the air and said, “Yay!!!” This
particular doctor describes herself as “conservative” – meaning she errs on the
side of caution - so I was thrilled to hear that what they’d seen on the scan
the day before didn’t warrant further exploration.
The bottom line(s) are these…they still don’t entirely know
what’s going on, and she is still very much one of a kind. We will continue to monitor every 6 months or
so because it is possible that all of
this could turn into something else, though the concern was tempered with the
pleasure of the current status.
Essentially, everything looks the same.
Not better, not worse. And while
better would be better, “not worse” is still fantastic. Since it does not appear that these are going away on their own, there will most
likely be surgeries down the road to remove the lesions (from the outside). We may even begin that process when we return
in 6 months. At the moment, we don’t
have serious concern that any of them is causing developmental problems (as
some have in the past) so removing them isn’t urgent.
It looks like she’ll be able to quit taking some or all of
her daily medicines now as well. Two of
the three drugs are to treat issues that may be caused by the third. We don’t know that for sure, but at the very
least, she should be quitting the most expensive and potentially problematic
one. Woohoo!!! Of course, lots of babies (and adults, ahem)
have reflux so that may or may not remain.
And it wouldn’t be a stretch to think that all the extra vascular mess
she has is causing high blood pressure.
We’ll just have to wait and see if the reflux and high blood pressure
exist independent of the immunosuppressant. She’ll also likely continue her antibiotic for
a few more months as is protocol post-chemo.
And finally, our doctor in Cincy is recommending that our visits here in Nashville be spaced out to every 3 months instead of every one. How great would that be??? Crazy great! All in all, we left the hospital in great spirits and
celebrated at our favorite little place, just a few minutes from the
hospital. We’ve only been to 2 or 3
places, but we found this one first, so why keep looking? If you’re in town, go visit Adriataco’s. SO SO SO yummy. I may or may not be hungry for some more right now...Anyway, after packing up, we hit
the road and had a great trip home. We’re
all pretty worn out and spent the day “recuperating.” Aida took TWO 2+ hour naps! :)
So for now, we keep believing for complete healing and giving thanks for an amazing last 13+ months. Thanks for the continued prayers. We are eternally grateful!
